Aa
Quick question re: TN & MS
On a curious note, how many here dx with MS have also experienced Trigeminal Neuralgia as well? Over the past few weeks, my numbness, tingling, and intermittent shock-like sensations in hands and feet have increased. This along with the relentless chronic fatigue. Simultaneously, I've had left side jaw pain, numbness and tingling on left side along with a few additional symptoms that an ER doctor suspected might be TN.
He suggested I schedule an appointment with a neurologist! With my years of historical symptoms, my efforts with various neurologists, a plethora of MRIS ..... I'm getting a little frustrated when pointed back in the direction of neurology when an explanation after these evaluations cannot be provided.
I'm truly beginning to wonder if something was missed or simply not visible on my MRIS. My suspicions are based on physical debilitating symptoms that I believe other non neuro MD specialists are also pointing in that direction.
It's very frustrating as I can imagine many have faced here. I realize neurologists maintain a certain criteria but if numerous physicicians continue to point in the direction of neurology, when I've navigated that path in depth void of answers ....what is one to do?
Just a little frustrated. Big .........sigh
He suggested I schedule an appointment with a neurologist! With my years of historical symptoms, my efforts with various neurologists, a plethora of MRIS ..... I'm getting a little frustrated when pointed back in the direction of neurology when an explanation after these evaluations cannot be provided.
I'm truly beginning to wonder if something was missed or simply not visible on my MRIS. My suspicions are based on physical debilitating symptoms that I believe other non neuro MD specialists are also pointing in that direction.
It's very frustrating as I can imagine many have faced here. I realize neurologists maintain a certain criteria but if numerous physicicians continue to point in the direction of neurology, when I've navigated that path in depth void of answers ....what is one to do?
Just a little frustrated. Big .........sigh
I'm going to dig through my medicine bottles. I saw this listed on the Internet, but the name didn't look familiar, but it's been a while. The pain IS terrible! It came on so suddenly that I thought for a moment someone actually stabbed me in the face!
Thanks, essdipity.
Thanks, essdipity.
The med usually prescribed for TN is Tegretol (carbamazepine). I can't take it because it destroys my blood platelets, and even a smallish dose causes me to lose my balance and stagger around. I've had 2 attacks of TN, which is in a class by itself in terms of pain, as I'm sure you know.
I have MS and have been diagnosed with TN several times; in fact, I have it now. I haven't had it in a while, and I forgot the name of the medicine I was prescribed, so that is why I'm here on the forum to find the name and dig through my medicine bottle cabinet.
I was diagnosed using a 1.5T and this is the machine that is used once a year. From what I understand, it's the software that is used that makes a huge difference. Also, it matters if MS protocol is used. Lesions will be missed when slices are to large to pick them up. Lesions should show up on the 1.5T. With that being said, an open machine or one with lower magnification is completely useless. I had one done to rule out a brain tumor and no lesions showed up.
This kind of ping pong ball treatment is frustrating, to say the least. I've been ping pong balled around in the rheumatology arena until my sister told me to see a neurologist. This made me crazy for a while from frustration that I just quit going to see doctors and lived in pain without a possibility, I thought, of any hope.
My sister was diagnosed and she urged me to see a neurologist. Then, I was diagnosed. Later on I went to an MS Specialist, and had to do through the same tests to determine if in fact it was MS. It was, and I'm so grateful I did. I see a huge difference between the two doctors. I can't imagine anything else. From what I've told, you can go to an MS Specialist if you suspect MS. They will run many tests to determine what it is that's causing your symptoms. I actually would start there. In the least they'll follow you for a while to see what your symptoms do. One thing for sure, they'll have the correct procedures on the MRI. The technicians will do MS protocol on the right machine.
Oh, I do get pain in my feet with the right side being extremely worse. People have said that it was plantar fascaitis (can't spell), but the MS specialist told me it could be MS. She prescribed Gabapentin (which is also related to peripherial (spelling again) neuralgia, and it worked. I take two now, and I'm pain free in my feet.
Best wishes,
Debbie
I was diagnosed using a 1.5T and this is the machine that is used once a year. From what I understand, it's the software that is used that makes a huge difference. Also, it matters if MS protocol is used. Lesions will be missed when slices are to large to pick them up. Lesions should show up on the 1.5T. With that being said, an open machine or one with lower magnification is completely useless. I had one done to rule out a brain tumor and no lesions showed up.
This kind of ping pong ball treatment is frustrating, to say the least. I've been ping pong balled around in the rheumatology arena until my sister told me to see a neurologist. This made me crazy for a while from frustration that I just quit going to see doctors and lived in pain without a possibility, I thought, of any hope.
My sister was diagnosed and she urged me to see a neurologist. Then, I was diagnosed. Later on I went to an MS Specialist, and had to do through the same tests to determine if in fact it was MS. It was, and I'm so grateful I did. I see a huge difference between the two doctors. I can't imagine anything else. From what I've told, you can go to an MS Specialist if you suspect MS. They will run many tests to determine what it is that's causing your symptoms. I actually would start there. In the least they'll follow you for a while to see what your symptoms do. One thing for sure, they'll have the correct procedures on the MRI. The technicians will do MS protocol on the right machine.
Oh, I do get pain in my feet with the right side being extremely worse. People have said that it was plantar fascaitis (can't spell), but the MS specialist told me it could be MS. She prescribed Gabapentin (which is also related to peripherial (spelling again) neuralgia, and it worked. I take two now, and I'm pain free in my feet.
Best wishes,
Debbie
1 Comments
Very interesting what you shared. I thought it was odd that the MS specialist did not order both MRIS with MS protocol considering symptoms and history. Further, he did stress that the software used now v. 15 years ago is far better for imaging and clarity. That said, I'm still not convinced considering I deteriorate without answers.
TN is in a class by itself in terms of pain. I've had 2 terrible attacks., relieved only by steroids. In general it can be caused by blood vessels, a growth such as a tumor, or MS, but this is a big oversimplification. A special MRI/MRA procedure eliminated the first 2 possibilities, and my very conservative neuro insisted I also see a neurosurgeon for his evaluation of the imaging. MS.
2 Comments
Yes.... And as more conditions are ruled out with me, by qualified physicians, my concern elevates toward MS considering a symptomatic history. Though still open to other possible ailments .... That openness continues to narrow based on absence of alternative findings. Heartbreaking and frustrating at same time.
That said .... Truly I appreciate the wisdom, shared experience and support here as it provides a calm very much needed in my life currently. :-/
My first symptom was TN; however it is not typical. Mine started with my right cheek going numb. It gradually spread all over my face. It is not painful nor do I experience shock like sensations. Best description is my face feels tight. It does not come and go. It remains constant. It is very annoying to say the least.
Gina
Gina
1 Comments
It truly is painful. I've had this in past but not as excruciating. Trying to get in for an appointment with the last MS specialist I saw. Of course ... First appt isn't until April! Now the waiting game ensues. I'm wondering if pushing to have another MRI on a 3T might be in order considering persisting symptoms. Sadly..... I pushed for this the first time but not taken seriously.
I haven't had TN, thank goodness as it sounds absolutely painful! I hope it is short lived for you! I totally get where you are coming from with the frustration that it is suggested that you go back to neurologists, and yet get no answers. I am also of the mindset that something is being missed on the mris...either the activity isn't leaving any permanent scars yet so they can't detect it, or the strength of my spine MRI wasn't strong enough to see the damage. Either way, I know something neurological is going on, something so textbook to MS, it's mind boggling that I'm still in limbo. Sigh. I can totally relate!
Karen
Karen
1 Comments
Undeniably I know exactly where you are coming from......OY!
Trigeminal neuralgia was my presenting system -- which apparently although not common, does happen according to my ms specialist. I had TN in 2013 for about 4 weeks ... and thankfully, I haven't had it since. It's personality altering pain.
And chin up. Not saying you have ms -- hopefully there is still an out. But by December 2015 every single physiotherapist, doctor (including other neuros), orthotist, anesthesiologist, OT etc. I saw just assumed I had ms. The diagnostic process, whether ms or not, is crazy-making. I understand exactly where you are coming from.
The answer to "What is one to do?" -- unfortunately, is wait :P.
And chin up. Not saying you have ms -- hopefully there is still an out. But by December 2015 every single physiotherapist, doctor (including other neuros), orthotist, anesthesiologist, OT etc. I saw just assumed I had ms. The diagnostic process, whether ms or not, is crazy-making. I understand exactly where you are coming from.
The answer to "What is one to do?" -- unfortunately, is wait :P.
1 Comments
Thx aspentoo.... When I catalogue the umbrella of symptoms traveling a mile long :-O I get frustrated considering I'm always pointed back to neurology by other non neurology specialists. If they only knew the unsettling mindset when feeling like a ping pong ball! Though I understand their position, they must understand the patients also.
If however, I repeat another MRI utilizing a 3 or 4T magnet, and findings are apparent / visible considering the recent MRI non findings, I will embark on a campaign to force the issue that in various cases a 3T should be standard protocol. This is where a line should be drawn. In that, and based on information and belief, a patient should be afforded the right to request a higher res magnet if symptomatic concerns continue after review of MRI testing lands in a non finding category.
And if two or more physicians have ruled out any and all other possible causations it would seem reasonable to enforce the aforementioned. Just seems fair to me anyhow as I've endured this not so fun roller coaster for years now without explanation after diligent efforts seeking answers.
In same breath .... I cannot fathom how frustrating it must be for those few physicians who truly press forward with investigative efforts seeking explanation yet come about empty-handed. Both for them and the patient.
If however, I repeat another MRI utilizing a 3 or 4T magnet, and findings are apparent / visible considering the recent MRI non findings, I will embark on a campaign to force the issue that in various cases a 3T should be standard protocol. This is where a line should be drawn. In that, and based on information and belief, a patient should be afforded the right to request a higher res magnet if symptomatic concerns continue after review of MRI testing lands in a non finding category.
And if two or more physicians have ruled out any and all other possible causations it would seem reasonable to enforce the aforementioned. Just seems fair to me anyhow as I've endured this not so fun roller coaster for years now without explanation after diligent efforts seeking answers.
In same breath .... I cannot fathom how frustrating it must be for those few physicians who truly press forward with investigative efforts seeking explanation yet come about empty-handed. Both for them and the patient.
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